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Lupus?

9 replies

Tiredo · 17/01/2023 12:11

Ive been consistently ill for around 13 months straight (after birth of 3rd baby - my first csection) infact it’s a running joke in our house that I’m always ill.

I kept being told by healthcare professionals, I’m just tired, it’s because of the toll of surgery/breastfeeding/lack of sleep, told to go to physio for swollen and sore joints, told to use better skin cream for my very clear butterfly rash on my face and told I need to lose weight (fair enough I did/do).

Ive used all the creams- rash hasn’t gone and when I’m very ill it flares up terribly.
Ive lost just over 4 stone - joints are still awful and I’m still so swollen on some days I look just as heavy.
DH has been getting up with DC and I’ve been having early nights - still the fatigue is unreal.
I do gentle exercise (all advised by physio) - still I’m low, sore, so tired, kidneys are in agony some days im writhing I’m writhing in agony and no infection is found in urine, occasional heart stabs/jerks and sometimes sharp and dull pains in my chest (lungs).

My hair is falling out on my body (legs, eyebrows, thinner on my head).

Im finally booked in for ANA blood test tomorrow but the fear it will be negative and/or positive is really shaking me. I just want to know what’s wrong with me now but also worried about the lifelong effects/treatments, this has been going on for around 7 years (flare ups) but really started showing itself consistently after the birth of my 3rd DC (13months ago).

How did anyone else’s experience of similar or infact lupus go? Is this similar to you or was it something completely different?

Im only 32 for context.

OP posts:
Tiredo · 17/01/2023 12:12

Also posted in ‘Women’s Health’ board too as wasn’t sure if it’s something more prevalent in women after birth.

OP posts:
Notaboutthebass · 17/01/2023 16:34

I'd post in the autoimmune topic, it's quite busy there.

Tiredo · 17/01/2023 16:46

Ah thank you, I didn’t realise there was one (new to all this 😑). Thanks again!

OP posts:
smooththecat · 17/01/2023 17:00

It’s shockingly difficult to get a diagnosis for anything non-standard on the NHS, I can see that they might not regard your symptoms as severe, even though they are debilitating to you and represent a significant drop in quality of life. They aren’t so good at ruling everything out and Lupus is normally a diagnosis of exclusion. I had a positive ANA test but no diagnosis due to being only slightly in or out of the range or only slightly raised (can’t remember how it works). I’m still ill but not as ill as I once was. I hope you get some answers and can go under the care of a rheumatologist if appropriate. My main symptoms are neurological and chest pain, I also have some hyper mobility in joints and joint pain but no swelling. I have no classic rash, it surprises me that it hasn’t been easier for you to get tested if you do have the rash since it’s a classic marker. I think it can appear as rosacea to the untrained eye, and a GP might count as untrained in this area as it’s specialist. I was only put through the testing etc. as my neurological symptoms are quite serious, but still have no firm diagnosis other than potential hemiplegic migraine and I’m not sure that that’s even properly recorded in my records.

Notaboutthebass · 17/01/2023 18:47

@smooththecat what are your neurological symptoms?

smooththecat · 17/01/2023 21:07

Double vision and intermittent nystagmus (wobbly eye) located to a particular cranial nerve. Left-sided numbness and weakness. Symptoms come and go. Headaches. Sending you all the best for the test, hope you get some answers.

Tiredo · 23/01/2023 11:06

Thank you for the replies! I’ve just called up my drs and the receptionist said my bloods have come back but not been assessed yet, she did say they mostly look within range but iron might be out. However.. I have all the indicators for Lupus! Why would I have a very clear butterfly rash, really sore and stiff joints, crippling kidney pain yet no infection etc if it’s just my iron levels?

Im so confused and deflated.

OP posts:
Starrr123 · 06/05/2023 07:31

@Tiredo hi how are you? How are you feeling now ? What were your resukts. Going through the same atm x

NeedCoffeeNowPlease · 06/05/2023 07:50

Butterfly rash or rosacea? Have you had other tests than just ANA? I have a family member being tested for this, among other things, and they did about 30 different tests, quite a few I'd never heard of.

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